I was diagnosed with Chronic Fatigue Syndrome in 1996 by the prestigious Lahey Clinic and chased an unresolved fatigue for twelve years eventually ending up bedridden and on oxygen Oct 2008. My illness was a result of undiagnosed Lyme disease

http://www.telegraph.co.uk/health/10137694/Emily-didnt-only-have-ME.html

06/24/2013 08:11 AM
I was diagnosed with Chronic Fatigue Syndrome in 1996 by the prestigious Lahey Clinic and chased an unresolved fatigue for twelve years eventually ending up bedridden and on oxygen Oct 2008. My illness was a result of undiagnosed Lyme disease and I have been taking antibiotics but did not see measurable improvement for the first sixteen months. Support groups (Lyme disease in the UK: http://www.lymediseaseaction.o/... encourage patients to stay the course even though you may feel little relief. Family members usually recognize improvement in their loved ones before the Lyme patient does. Four and a half years into treatment I no longer have crippling joint pain which required vicodin for relief , no light and sound sensitivities, and energy production has been improving monthly.

I created the following petition on behalf of the families devastated by Lyme disease who have witnessed first hand a community of physicians influenced by the CDC’s ongoing disinformation campaign aimed at promoting the idea that Lyme is little more than a nuisance disease.

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

https://www.change.org/petitio...

In a month’s time this petition has collected 3,581 signatures and 86 pages of heart wrenching stories from across the country as the late stage Lyme epidemic rages out of control while the medical community and state departments of health practice willful ignorance.

The denial of this epidemic and refusal to reimburse for treating persistent infection has caused untold pain and suffering across the nation.

Johns Hopkins published a study that followed patients who were treated from an acute Lyme disease stage but went on to develop debilitating symptoms after the standard IDSA treatment protocol.http://www.ncbi.nlm.nih.gov/pu...
35% of patients met the definition of post-Lyme syndrome 6 months after treatment and as many as 45% with one major symptom. I have suggested to Dr Aucott he test these patients using Advanced Laboratory Services’ Borellia Culture test. http://advanced-lab.com/news/b... We now have proof that chronic Lyme exists through Advanced Laboratory Services’s Borrellia culture test as the laboratory is reporting positive cultures in 80% of symptomatic post treatment Lyme patient specimens so why is the CDC in no rush whatsoever to embrace this technology?

Because the true epidemic and deceitful handling of late stage Lyme disease will finally be exposed!

Sincerely,

Carl Tuttle
Hudson, NH 03051

Website: New Hampshire Lyme Misdiagnosis
http://home.comcast.net/~runag...


Letter to the Editor, The Lancet Infectious Diseases Published May 2012
http://www.thelancet.com/journ...